(1) Is it true that diabetes tests are as good as IGF-1 and OGTT? I have told my doctors that the Internet said they were not because the latter were more accurate but they don't believe it. They continue to give me regular diabetes tests instead and don't want to give me the others. My last IGF-1 test was about 10 years ago and I pushed very hard for my first OGTT about three months ago (even though my request angered them a lot). The level may have been slightly high but not much. My second last blood sugar test was also overly high although my last one was normal.

Are two IGF-1 tests and one OGGT in an entire lifetime all that are required to determine acromegaly when a patient has about 50 clearly obvious signs of it, including clear and obvious growth of several body parts (bone growth on forehead, nose, hands tooth spacing, and massive foot size increase included)? Or should they be done ONLY once every 20 years or so? They don't want to give me anymore because they think it's just caused by weight gain. They say I probably don't have it because my nose (which is also much wider than it used to be compared to face width), isn't big enough. (Gads it's honking huge now! Also have a lot of breathing and sneezing problems, snoring & choking at night and nasal drip.)

(3) When a patient also has melasma and is overweight, and is on Cabergoline because of continual tumour growth over many years and high prolactin, is one cortisol test all that is needed for an entire lifetime? I'm too afraid to ask because doctors get so angry when patients ask for tests. (As it is I am already taking anti-spasm drugs for muscles for many years because of violent muscle spasms which can be crippling for days so I thought it might be a good idea to check out the cortisol).

(4) I have been told that when a patient has high prolactin, it is not possible to have the human growth hormone as well, even when the tumour continues to grow every single year for several years. I once asked about this on the Internet and someone told me it was indeed possible and in fact common, but doctors won't believe me. Could someone please confirm that again? Dentists have also told me that such tumours cannot cause tooth spacing and the Internet is full of bunk. All of them just keep saying not to read the Internet, which makes me read it more and more, wishing they would also educate themselves.

(5) I am told not to worry about the fact that my third abnormal EKG tests showed bradycardia and left ventricular hypertrophy and low voltage. They are telling me that this is quite normal and that it is caused only by anxiety and is absolutely nothing to worry about. But I am concerned, knowing that Cabergoline may make such a condition worse. So far it has only improved the serious irregularities because it has speeded up the heart (often a little too fast). Should my heart not be tested so they have something to go by when attempting to assess the degree of further damage that may be caused by Cabergoline, or even be able to access whether the Cabergoline is too strong, or are such heart tests more dangerous than safe?

(6) If have been on the Cabergoline for about a year now because I was starting to sleep my whole life away. Three months after I started taking it and the prolactin had dropped markedly, I felt great and could stay awake too. But the tumour on the MRI at the time was still the same size as it was 5 years earlier so I likely . [B]Will it shrink in time or will I be stuck on this for life? They tell me that they can't operate on pituitary tumours because they are so deadly, but I do know of people in BC who have had such operations done. Are some pituitary tumours merely more dangerous than others? If so, what makes one harder to treat than another? They have been watching mine grow for several years now, from 3mm to 1.2 cm.[/B] I'm kind of afraid to stay on this for life in the event that it can cause more harm to liver and kidneys than I already have, not to mention the rectal cancer or melanoma, especially in light of the fact that I have already had one type of cancer and have a relative with skin cancer and am fair.

(6) I have developed breast cancer since the tumour and am also very afraid of melanoma because of the massive numbers of skin changes and multiple moles and skin tags. Some of the very irregular and itchy moles have been sprayed off with a spray can. They don't want to refer me to a skin specialist and deny that there is any connection whatsoever between melanoma and skin cancer. There is, isn't there?"

(7) I have been bleeding every single day from extremely painful internal hemorrhoids, for many years now. They are extremely painful and are ABSOLUTELY NOT caused by constipation. The only treatment available is another colonoscopy and another and another. Colonoscopies don't cure this and I hate the idea of "WAITING" until I get cancer, since I heard that there is an association between acromegaly and colon cancers. As it is, my entire life has been on hold because I can't walk very more than a block or two "only" because of this problem." Because of this, my vitamin D level is also seriously low. That, on top of breast cancer may make cancer more likely to come back. (You can't exactly lie on the deck in zero to minus 30 degrees in winter in Alberta, Canada, to get sunshine). They told me to boost my Vitamin D pills to 4000 from 1000, but that made my liver much more sore than usual and caused bad kidney pain so I cut back again and it improved quite a bit. (They think my sore liver is just acid reflux but I don't have any of the signs of that. The pain is 24 hours a day versus just after eating). Is it true or false that there is an association both between acromegaly and colon cancer? They tell me that there is no association between acromegaly and cancer whatsoever.

(8) I am also bleeding pink from the front area so they wanted to do a laparoscopy. I didn't want one, feeling it was probably caused mainly from kidney problems, because my back toward the kidney area are always tremendously sore. (Spine is very deformed and have tumours underneath feet so could be caused by tailbone being toward front of body I suppose). Because of these problems, and because of severe muscle problems for many years (spasms) I fear that gadolinium every few years is especially dangerous but they assure me that it is not because my kidney tests are fine. I have read that gadolinium can be especially deadly on people with kidney problems -- so much so in fact that it has been blackboxed by the FDA. Although the endocrinologist I was allowed to see about 6 years ago said that gadolinium wasn't always necessary, the radiologists "refuse" to give MRI's without it, and force me to take it anyway, saying the quality of the pictures would be so bad they would just be a waste of money. Should I be concerned about kidney problems? (Come to think of it, maybe they think that I have no other alternative anyway).

(9) My blood platelets have been falling over the past year or so (which might be another reason why they don't believe I have acromegaly and why they have not increased the .5 Cabergoline dosage for a year). They don't know what is causing this but tell me not to worry until it lowers to about 60, at which time I should be half dead. Fearing greatly that this might also have meant an enlarged spleen, I requested an ultrasound, which I was given, although that made them very angry. My spleen turned out to be upper normal size but they did find a gallstone and kidney cysts. I realize that there could be at least 3 causes for the drop (1) the everyday normal bleeding, (2) breast cancer possibly spreading, or (3) the fact that even the .5 Cabergoline is possibly too strong because in spite of many acromegaly symptoms, I may indeed not have acromegaly at all. Am I wrong about number 3?

Please don't tell me to ask my doctor about these things. Doctors here are highly understaffed and overbooked because there aren't enough of them in Canada (especially white Canadian doctors) so there is no time for communication other than to state what's hurting that day (kept at a minimum please).

I guess universities don't get as much money for educating white Canadians as they do the people fom foreign countries. No, I'm not biased against colour but do admit that I believe patients overall are "generally" more comfortable with their own colour, especially when asked to strip down, and nationality also can make a difference because problems can exist if people don't understand many words and/or customs. If you don't believe me, try asking a produce clerk at Walmart where the peaches are.

Last edited by Jul2; 01-30-2012 at 05:36 PM.
Reason: Added

The following user gives a hug of support to Jul2:reves777 (01-31-2012)

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

Hi. Im new here and came to this site for answers and support for my functioning pituitary tumor, which is destroying my entire endocrine system (Thyroid, adrenals, hormones,etc.). Doctors have pawned me off to other doctors for years, so I can TOTALLY relate to your frustration. Ive been told that Im "too complicated" for them (even specialists), and that I need to find a top neurosurgery hospital specializing in the most current and cutting edge technology. To answer your question partially, YES..surgery is possible! ANY doctor that gets angry when youre just asking for help and further clarification should be dropped IMMEDIATELY! If caberline(that medicine you mentioned) is bromocriptine, then YES, it can affect your test results, kidney function, and can also increase tumor size during or after taking it. I know this from experience. I took it to lower prolactin levels and reduce tumor size. That other medicine you mentioned that they give you both by mouth and inject in your IV before the MRI...EVERY MRI Ive had I was required to have a kidney function test before they could do it because it does, can, and will affect your kidneys. Hope this helps. There is help out there...dont listen to these uncaring doctors...keep looking and dont give up! Bottom line...ITS YOUR LIFE! Best of luck to you and Ill be praying for you! <3

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

Thanks for replying. I fully understand what you're going through and wish you luck too. I think most every pituitary tumour patients feel the same.

That title was supposed to say Doctors Know Nothing obviously. Sorry for the typo.

I don't know about you, but I'm angry. I think that that's the way most pituitary patients are treated, especially when their tumours grow. Doctors know little about the disease and you can't blame them in a way because endocrinologists are about 10 years behind in the latest data as well. Because GP's learn from those endocrinologists, I swear they are about 15 years behind.

It's easier for doctors to state in every pituitary patient's record that he is just a hypochondriac, than it is to to treat him I guess. The same thing happens with patients with fibromalgia. (Thank God I don't have that one!)

Once doctors put this word in their records, it acts as a loud horn telling any other doctor who might see them to just give them a sucker and send them off. The pituitary patients are pretty well doomed for life.

Because these tumours cause such extensive suffering in so many ways, doctors don't want these patients in their offices. They are a pain in the butt to be sure, with one problem after another (even though their problems do clearly show up in lab tests as being physical). The resulting illnesses leave doctors so frustrated that their main goal is to simply drive them out of their offices as fast as possible to keep costs down. .

Researchers then come along and say, "we have "noticed" that most pituitary patients suffer from hypochondria." What bunk! I can't believe they get paid for such false observation when the true reason thee patients were branded that way was because doctors simply didn't want to treat them when treatment was indeed available.

I hate it when doctors say, "Although I can't help you in any way, you must stop using the Internet, suggesting that even the most well known endocrinologist web sites spew nothing but garbage. How can they say such things when they can't offer treatment themselves? When will medical people learn that it's constant lack of treatment and the horrid pain and suffering that such patients are forced to endure that drives them to the Internet in the first place?

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

Quote:

Originally Posted by reves777

Hi. Im new here and came to this site for answers and support for my functioning pituitary tumor, which is destroying my entire endocrine system (Thyroid, adrenals, hormones,etc.). Doctors have pawned me off to other doctors for years, so I can TOTALLY relate to your frustration. Ive been told that Im "too complicated" for them (even specialists), and that I need to find a top neurosurgery hospital specializing in the most current and cutting edge technology. To answer your question partially, YES..surgery is possible! ANY doctor that gets angry when youre just asking for help and further clarification should be dropped IMMEDIATELY! If caberline(that medicine you mentioned) is bromocriptine, then YES, it can affect your test results, kidney function, and can also increase tumor size during or after taking it. I know this from experience. I took it to lower prolactin levels and reduce tumor size. That other medicine you mentioned that they give you both by mouth and inject in your IV before the MRI...EVERY MRI Ive had I was required to have a kidney function test before they could do it because it does, can, and will affect your kidneys. Hope this helps. There is help out there...dont listen to these uncaring doctors...keep looking and dont give up! Bottom line...ITS YOUR LIFE! Best of luck to you and Ill be praying for you! <3

Gosh, now I'm scared, because my Endo told me that MRI is completely safe for me, I had 3- times MRI during last 5 years!! Nobody asked me about my kidneys! They also told me that the injection before MRI is completely harmless. Can you tell me what it is actually?
I don't trust any doctor anymore...

The following user gives a hug of support to Diana64:Jul2 (02-15-2012)

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

That's the problem. They will tell almost all pituitary patients that they are too complicated to treat. Doctors aren't interested in treating people with so many ailments and will indeed try to pawn them off. There is no way you can convince them that all of these things have a direct relationship to the pituitary tumour, even if you have 100 different signs of acromegaly.

They will indeed tell you go to specialists instead. In Canada they don't charge. The only problem is that you can only see an endocrinolist every few years, so you are forced to get all of your information from the Internet.

Because these patients have no where to go, many will simply be left to become so chronic they will die. I don't believe this is an accident at all. The disease is very expensive to treat, particularly when doctors won't acknowledge it because they don't know a thing about it. By the time they do discover it (10 years later than they should have if only they had "listened" to the patient's complaints or even asked about the symptoms, which they would never do because they don't know what they are), it will be too late.

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

You have to sign a form saying you understand all the risks, even though the great majority of patients won't have a clue of the true dangers. Many won't even bother to read the micro print, which is deliberately made as small as possible. Don't worry. I have had gadolinium about 6 times over the years (mind you I do have large dark spots on the face and joint problems). It's not that easy to tell if the gadolinium is harming you when you're not allowed to see skin specialists and your joints are simply sore. That, no doubt, would cost a fair bit of money to detect. I guess all patients can do is simply be aware that all medicines are dangerous in some way. Not one is 100% safe.

I know what you mean when you say you don't trust your doctor. Most doctors have been trained to withhold information so as to not scare patients. But today it doesn't take most patients long to realize that they're doing exactly that, and then the trust is lost.

Doctors generally test your kidneys before giving you the drug, and that leads them to believe your kidneys are fine. But I don't think kidney stones show up in those tests because I had one. If you wear a clear white pad for an entire day (or can even try it for 2 days if you like) and don't see any pinkish tinge, and if you have no ache in the lower right back and don't experience a lot of kidney infections, and if you don't have to run to the bathroom all the time, chances are your kidneys are healthy. Gadolinium would surely be a little more dangerous for older people but then what are you going to do? Refuse the test? This is why doctors often don't tell the patients. It just makes them confused. They sincerely believe that, unlike them, patients can't deal with confusion. Patients can, even though that may delay treatment. They just have to be careful not to delay it past the MRI date or it could take months before they can get another MRI.

They also don't seem to realize that today many patients will look up the information on the Internet and will indeed feel as though they distrust their doctors when they do find out the cold hard truth.

I think doctors should ask all new patients whether they are the types who want to hear the cold hard truth about everything or whether they would rather not know at all. There are the two types of patients, and if doctors knew which type they were speaking to, both doctor and patient would much better understand each other.

If you do get the gadolinium, just drink a lot of water before your MRI -- as much as you think you will be able to hold to endure a half hour MRI, if that should be the case. That will help clear the gadolinium out of your system faster. Although I haven't done this, I'm thinking too that a heavy metal flush might not be a bad idea afterward also.

My endo said I didn't need the gadolinium. He said some of his patients never get it, but most technicians will refuse the MRI if you don't get it, so maybe people who want one without it should call their endocrinologists and ask where their patients are getting the MRIs. Keep in mind though, that without the gadolinium, the picture will reveal maybe only 1/5th (a gues) as much as with it.

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

Don't know that it's the fault of the doctors themselves either. It's my understanding that most medical schools are sponsored by Corporations and if a company isn't huge, it might not be able to get universities to teach about the diseases that can be helped by it's product. I could be wrong of course, but that's my feeling.

So if doctors get out of university and know little more than how to write a prescription for a common cold, perform a checkup or send patient for blood tests, can you blame them? They don't exactly have a lot of free time to go home and study on all the topics they never learned about every night, so it is my feeling that if you need much more than one of those quick things, basically you're out of luck.

Can you blame the doctors? I'd say no. We can't expect them all to be walking encyclopedias. How many of us would go home and spend hours researching problems for a company we work for to find answers to every little thing ourselves? When they go home, most just want to put their feet up and watch a hockey game or something like those of any other profession -- either that or grab a badly needed nap.

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

Don't know if my other message posted so am trying again.

Think pituitary patients basically have little other option than to bang their heads against the wall in the hopes that that will destroy the tumour. How many doctors want to go home at night and learn about things like this on their own when there's a hockey game or something on? They like free time like everyone else, and if universities don't teach them much more than how to apply a bandaid, take a medical test, send people for blood tests, or write a prescription, I doubt most would want to create extra work for themselves by doing research after they got home. If the answers aren't in their little medical book, that's probably the end of that in most cases.

Re: Doctors No Nothing About Pituitary Tumours! What tests are necessary?

Actually Cabergoline (Dostinex generic) is a bit different from Bromocriptine. I did try the Bromocriptine but couldn't take it. The Cabergoline only has to be taken once a week as well, which is great.